As part of the continued development of our support services for adults affected by mitochondrial disease, the Newcastle event saw over 100 patients and families from across the UK come together for the day. This was a fantastic opportunity for people to hear about many different aspects of mitochondrial disease, including the adult support and services we now offer as a charity.
Although we have been supporting mito families for over a decade, our dedicated adult support service is relatively new. To make sure we continue to provide the best support to all our patients and families, Dr Lyndsey Butterworth, who leads the adult support service, started the day with a small focus group supported by the WCMR Public Engagement fund. The aim of this focus group was to find out what adults affected by mitochondrial disease think about the services Lily currently offers, and how they might be improved.
“It’s really important that we listen to people affected by mitochondrial disease and give them an opportunity to have their say on the support services offered by The Lily Foundation," said Lyndsey. “The focus group itself was hugely beneficial, and we would like to thank all the patients and families who gave up their time to take part. The discussions that took place and the feedback received is crucial to help us shape our adult support services in the future.”
The introduction to the Patient Information Day was given by Prof Sir Doug Turnbull, Director of the WCMR, who acknowledged the close relationship between the Newcastle Team and The Lily Foundation. Prof Turnbull highlighted how by working together we can improve the lives of those affected by mitochondrial disease. Lyndsey gave a talk about The Lily Foundation, including an overview of the support services offered by the charity.
There were plenty of opportunities for patients and families to meet with other members of the Lily Team who had made the journey north, namely Liz Curtis and Janet Wilson, who set up a Lily Information Stand at the event. This was important, as it allowed people to collect adult support packs now offered by the charity, ask questions related to their condition, and find out more about how to get involved with The Lily Foundation.
The event finished with a drinks reception and evening meal hosted by The Lily Foundation, which provided an opportunity for people to relax and meet one another in a less formal setting. This was a great chance for patients to socialise and share stories, which will hopefully lead to better peer support and most importantly, long-lasting friendships.
If you would like to contact us about the adult support services we offer, or have any ideas about how this service can be improved, please contact [email protected].